Restless Legs Syndrome Foundation Blog

August 15, 2022

Board Spotlight: Paul Rochester

By Clara Schlemeyer, Program Coordinator, RLS Foundation

Q: How and why did you get involved with the RLS Foundation?

A: A friend named Bob Waterman introduced me to the Foundation. You know Bob as a former chair of the board and founder of the RLS Foundation Research Grant Program. Bob and I were discussing different things when I mentioned that I had restless legs syndrome. He kind of perked up and said, “Oh, I have that, too!” So, we talked about our experiences for a while, and then he said, “I know an organization that could really use you on their board,” and that was the RLS Foundation. Bob invited me and my wife to visit with members of the board. I was very interested in the work they were doing, and Bob convinced me that my business experience would be a great addition. That was about five years ago.

Q: How has joining the board impacted your RLS journey?

A: You certainly know that you’re not alone! I have learned so much about the disease, the different treatments and the promising research being conducted. I finally switched medications to a therapy that involves opioids. I was very nervous about doing so, especially with the stigma surrounding opioid use. I learned that many others were taking opioids for their RLS, including other board members, which made me feel more comfortable. I have met a lot of amazing physicians as part of the board process, Dr. Chris Earley included. In addition, I have had the opportunity to speak with some of our very generous donors to thank them for their support. I always enjoy having a conversation with them about their experience to understand how the Foundation can help in their particular situation.

I don’t think the world understands RLS. When I tell someone that I have RLS, they often don’t know what it is. When I talk to someone who has RLS, especially a donor, they will tell me how miserable they’ve been and what they have been through to find a treatment plan that works for them. Serving on the board and speaking to others with RLS, you certainly appreciate that this is a very distressing disease, and the ramifications affecting daily life are often misunderstood.

Q: What do you enjoy the most about working with this board?

A: It is so great to be around smart people who are passionate and share a common cause. That’s the way I see it. Carla Rahn Phillips, our current chair, and Karla Dzienkowski, our executive director,are both incredible and very driven. It is nice to be around people who are working hard to change the public perception of RLS, to educate the medical community; and are committed to empowering those with RLS with the information they need to advocate for themselves.

Q: How has your experience with managing high-tech companies helped you on this board?

A: Well, it’s different in many ways, but we have a lot of the same challenges. At the Foundation, we have a very different product; information is our product. As for my high-tech management experience, I hope I have contributed to the Foundation’s vision, mission and process of setting lofty goals.

Q: Where do you see the board in 2022 and beyond?

A: I expect some new members to join. We lost two great board members last year who passed away: Bob Waterman, former chair emeritus; and Ron Anderson, who was new to the board but brought enthusiasm and fresh ideas. In addition, Ron Barrett rotated off the board after serving two terms as treasurer. While some people may drop off after multiple terms, new folks will join and bring a whole new perspective. We have all missed holding meetings in person. I am hoping to attend an in-person meeting, maybe this year, and looking forward to it!

Paul Rochester is an angel investor, public and private board member, and mentor to CEOs from high-tech companies and founders at all stages seeking growth and significance. He is a trusted business advisor to numerous companies and active board member to another half dozen. Rochester brings to the board his business experience, mentorship and leadership skills, which are all invaluable to the RLS Foundation. We recently spoke about his experience on the RLS Foundation Board of Directors.